Tuesday, September 16, 2014

Long Overdue Update

My healthcare adventure over the summer was a much longer and rougher experience than I had anticipated. Although I still have a way to go, I am finally back working and feeling much better. I ended up with a seroma and an infection, and I had several courses of antibiotics and getting the area drained. So much fun.  I still have pain in the area daily, and I still have a huge hard lump above my belly button. They will see about whether it needs to be removed in October, but we are giving it time to absorb first. I also still have some GI issues, especially with certain foods. I eat a pretty bland diet at this point to avoid problems. I do still get some pain on the lower left side, but it is mild and tolerable. I hope that this eases over time. It seems to mainly be when my GI is not happy in general.

My family was amazing during my recovery. I couldn't have done it without their help and patience. Morgan was truly a rock star nurse, and I know she will do a great job at it when she graduates and gets a healthcare job. Mike was so great at driving Morgan places and helping so much with errands and the house. He took over cat litter duty (still has it!) because of my weight lifting restrictions. My parents let me hang with them at their beautiful house that has an elevator! That made it nice to not have to worry about stairs. It also has the best view ever, so I got to sit in my anti-gravity chair and marvel in the beauty. My walks progressed from the hospital hallway to the short outside walks. I am not ready to start building up my walking program and maybe even some light swimming.

Unfortunately, I got a sinus infection or cold or something a week or so ago, and i was sneezing and sneezing and sneezing, and that caused some issues with pain and swelling. However, it is better now. I managed to travel to California for Stanford Medicine X with Morgan and then to TEDMed after that. It was a very long week, and I was so tired each day. I definitely need to work on getting my strength back so I can meet the social demand of these conferences. :) I got to attend my big brother's 50th birthday (old man now), and Tracy through a fantastic party for him. Unfortunately, I forgot that i hadn't been drinking for months, and I was wasted by the end of the night (sorry Mike and Tracy).

Of course, I second guessed my decision of having the surgery, the method of the surgery, and everything else that I could second guess when I was stuck on my cough feeling miserable. However, I already feel so much better than I did before the surgery, so I am feeling much better about it all now. :)

Advice for anyone having colon surgery like this:

1. Be prepared to be down for the count for weeks. When they say 8 weeks, they mean it. They aren't joking  :) If you get lucky and have a less invasive surgery than I did, you may be fine in less time. If so, you will enjoy it. If not, you will be prepared.
2. Do not be afraid to demand care. I probably should have gone to the ER when I first started having trouble, and I wish that I had gone earlier when the incision was having so many issues. I felt like such a pain to the office so many times, especially when i knew all the nurses and what was happening in their lives. :) It eventually got easier, and it is important.
3. GET YOUR RECORDS. Before the surgery, read all reports and visit notes. Make a summary or use CareSync to gather the records and get the summary for you.
4. Track your meds and pain levels. You can do this on paper or using tools like the CareSync app. Having this information tracked will definitely help you explain details that are easy to forget.
5. Tell your family exactly what you need. Don't be vague and expect them to know what to do.
6. Give yourself time to rest. If you rush, then it doesn't do anyone any good.
7. Investigate options for time off from your employer. There may be short term disability or Family Medical Leave Act policies that will help you.